The Invisible Illness the World Needs to Know About (ME/CFS/Fibromyalgia) Pearce's Story.
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Imagine insufferable pain throughout your body with no end insight? Seems impossible right? In a country such as Australia?? Well, think again!! Sharp pain in the chest, joint pain, fatigue in which even holding your neck up is a burden throughout the day. You visit the doctors for checks up and they tell you there is nothing they can do…you are in pain…you are not dying but nothing can be done!! No ibuprofen, codeine, tramadol, amitriptyline, lorazepam or buprenorphine can ease the pain!! Why? Because this is a syndrome which affects an estimated 250, 000 Australians known as Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS) and this figure does not take into account other Australians dealing with symptoms of fibromyalgia which includes continuous pain, stiff muscles and sleep problems. According to Emerge Australia, 1 in 100 Australians are estimated to have ME/CFS and 25% of people with ME/CFS are housebound/bedbound. Yes, and if being bedbound isn’t hard enough but ME/CFS and fibromyalgia sufferers are not entitled to any disability allowance by the Australian Government and family carers are not entitled to carers leave. Furthermore, before any of you out there who have not experienced or seen ME/CFS and fibromyalgia think these people are just dole bludgers wanting to stay at home and leech off of the government…well think again! Think about the last time you didn’t go to work due to the common cold?? Well now think about that common cold but 1000s times worse!! You have no energy, you are in constant pain, sometimes just even walking 50m is unbearable or typing on your computer creates pain in your finger joints!! Please, don't be ignorant!!! A lot of your country men and women are suffering for sometimes years on end and more needs to be done about it! I am one of the people in this country whose family has been affected by ME/CFS and fibromyalgia and probably like you, I had never even heard of the condition before!! But believe me it is real and it can strike you or anyone of your family members as it can simply be brought on by large amounts of stress or simply over doing it at work, or through any physical activity. My brother was only 20 years of age when he was diagnosed with ME/CFS as well as fibromyalgia now he is 24 and I write this in hospital, at his bedside. He has constant sharp pain in his chest with ongoing spasms in this area. The doctors are still at a loss of how to treat him as this syndrome has been given barely any funding for further research to be conducted so that a cure can be found for the acute and torturous pain known as ME/CFS and fibromyalgia. Unfortunately, my brother has been one of the unlucky sufferers who has been housebound, and this has understandably begun to have a significant impact on his mental health. Anxiety is a feeling he knows well, partly, because of the realisation that after four years is he ever going to recover from this? The doctors tell him it is just trial and error at this stage. Meanwhile, my 60 year old mother who went through a serious operation earlier this year, has spent her nights in the emergency department taking my brother to specialist appointments, having to take countless days off of work to look after him when he can’t move, trying any diet known to Google, seeing a naturopath, homeopath, dietician, various doctors and to what end? There is still no solution and there is still limited funding for research, for my brother suffering in hospital and my mother doing anything she can to care for him. So please, think for a second if this was one of your family members, what would you do?? All I can do is raise awareness and try to be there, but in the back of mind I am also thinking this could be me, this could be you, so please sign the petition so that more can be done and more can be done to help future sufferers and current sufferers of ME/CFS and fibromyalgia. Thank you.
As outlined above we would like the Australian Government to meet the following outcomes:
1. More research is needed into ME/CFS and fibromyalgia so that a cause, diagnosis, treatment and cure can be developed. For example, between 2013-2017 ME/CFS (250,000 sufferers) received just $0.55 million in Australian research funding in contrast to $35.06 million for Multiple Sclerosis.
2. General practitioners in Australia are to be more educated on dealing with and treating ME/CFS and fibromyalgia sufferers. To support this, new clinical guidelines for ME/CFS should be developed to replace out-of-date guidelines developed in 2002. Development of health advice in the form of new guidance for doctors has been identified as a core strategic focus by the National Health and Medical Research Council.
3. Improved access to NDIS for ME/CFS and fibromyalgia sufferers and their family carers.
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